By MaLea Berry, Paxton Swisher, and Kathy Garner
M&M TIPsters
Judging by the look on his face, it is apparent that Darius Weems does not let his disability get in his way. Even in the face of the number one genetic killer of kids, this 20-year-old Georgian still lives his life to the fullest. Darius has Duchenne Muscular Dystrophy, or DMD. To the amazement of those watching, however, Darius--who had never left Athens before--went on a cross-country quest with eleven of his best friends to get his wheelchair pimped on MTV’s "Pimp My Ride." A documentary was made about the trip and the movie was dubbed “Darius Goes West.” The main purpose of this trip, however, was to raise awareness about DMD.
According to Medline Plus, symptoms of the disease usually focus on the loss and degeneration of muscle function. Those diagnosed usually lose the ability to walk by age 12. However, immobility such as bed rest is not recommended, as it can make the disease worse. Other symptoms include an abnormal heart muscle (known formally as cardiomyopathy), enlarged calf muscles that are eventually replaced by fat and connective tissue (known formally as psuedohypertrophy), deformities of the chest or back such as scoliosis, and respiratory disorders such as pneumonia in later stages of DMD. Less common, but still present in some cases, are varying degrees of mental retardation, congestive heart failure, and irregular heart rhythms (arrhythmias). There is no known cure, but gene therapy may become available in the future.
There's more to Duchenne Muscular Dystrophy than just the physical component. Yes, you lose your ability to pick up your favorite toys, or hold your new puppy, or even turn a doorknob by yourself, but there's also an emotional aspect of the disorder that makes the life of a person with DMD much more complicated. Imagine having your mind set on doing an action as simple as grasping something with your hand and picking it up. Now imagine the frustration that would rise up through you if you couldn't get your hand to clamp your fingers on it.
In the documentary Darius Goes West, Darius tries to hold the phone up to his ear while talking to his mom, but when it falls to the floor, he can't bend down to get it and has to ask his friend to do it for him. When he goes to take a drink, he holds the glass in his mouth and has to 'throw em back' in order to drink it. Even then Darius remains upbeat.
“It really didn’t get me down,” he said. “I felt like I couldn’t let it beat me down or I could just live. I felt like just living with it and not thinking about the bad parts of it would help me get through everyday life.”
Anna, a blogger in an anonymous DMD support group on Experience Project, explained in a blog post about having Duchenne, "The biggest way the DMD has affected my life is my relationships with others. It has made me not very confident and afraid of what people will think of me if they found out I have DMD.”
Dealing with the disorder causes people to have to grow up just as rapidly as their disorder attacks them, and life becomes more precious when you know you don't have a good chance of living for long. The average life expectancy for a person with DMD is somewhere between their late teens/early 20s to around age 30.
Some people, though, don't let their disorder dictate what they do with their life. Josh Winheld, author of Worth the Ride, was diagnosed at age 4 and by the age of 10 he was wheelchair bound. In his book, he wrote, “I believe society often underestimates the complexity of living with a disability-the joys, the challenges, the ordinary, the extraordinary..." and went on to explain how he wanted to thank his family and friends for helping him without rendering him useless.
Anna, who experienced the rarity of being diagnosed as an adolescent, said that she looks to God for guidance and strength. She may not have much in her arms and legs, but "the strength of her faith" she said, really helps her get through her bad days, when she feels afraid of "not being able to have any independence".
Kathy Garner, 15, is a sophomore at Ursuline Academy in Dallas, Texas.
Paxton Swisher, 15 years old, is a sophomore at Parish Episcopal School in Dallas, Texas.
MaLea Berry, 15, is a sophomore at Paideia School in Atlanta, Georgia
Showing posts with label dmd. Show all posts
Showing posts with label dmd. Show all posts
Wednesday, July 28, 2010
Day in the Life of Darius Weems
By Emily Soroka, Lan'Tiqua Burks, and Damarcio McCoy, M&M TIPsters
Taking life one day at a time and never taking a day for granted, Darius Weems, a 20-year-old living with Duchenne Muscular Dystrophy (DMD), struggles with everyday tasks and depends on others.
"You can't stop yourself from coming to Earth; you can't stop yourself from leaving the Earth," Weems said.
An African-American male who is confined to his red and black power wheelchair, Weems’ most noticeable traits are his smile and happy attitude. Having a conversation with Darius you would never think that there’s anything wrong with him, but his disease takes a toll on him and the people around him. Darius tries to do some things in his own special way to be independent but he still depends on other people for a large part of his day.
Darius has a positive attitude toward life although he is living with DMD. He was diagnosed at age 5, and his brother Mario died of the same disease at 19 years old. Duchenne Muscular Dystrophy is the number one genetic killer of children and one in every 3500 has the disease. Victims typically lose the ability to walk by the age of 10 and the disease is 100 percent fatal.
According to Darius, wheelchair accessibility, or lack thereof, is his “biggest challenge.”One of the many things Darius has to deal with on a daily basis is non-accessible locations. He goes to places that are not wheelchair accessible to try to raise awareness of the situation.
“I like to go to places that are not accessible, so maybe if they see me, like a person in a situation, they would change it, if they see me come there and I can’t get in there and my friends can. Maybe they would just try to change the place,” Darius said.
“Accessibility is dependent on the owner,” says Amble Johnson, who helps Darius and deals with press.
Accessibility can be a big problem for people with DMD. They need help going places if they want to leave the house, and need to get driven around. Darius’s mom is there for him to help with these things. Darius’s wheelchair constantly breaks down, which also temporarily demobilizes him.
Eric Ninden, a victim of DMD who makes YouTube videos, needed help brushing his teeth by time he was out of high school and cannot lift his hands to his ears. Darius and Eric need help from friends and family with everyday tasks that wouldn’t be thought twice about for a person without DMD.
Darius has to take six medicines daily for his heart and is currently on a low sodium diet to stay healthy. He let out a laugh when he mentioned he cheats every once in a while. Taking medicine will not cure DMD, but it will help strengthen his heart and help his body function. Eric Ninden is on a diet like Darius that consists of avoiding sugar, refined food, and dairy products; instead he eats organic food. It’s important for a person living with DMD to stay on a healthy diet so they don’t become obese and cause any more stress on the muscles.
Support from friends and family make a huge difference to the victim. It takes away worry and stress, and helps them stay happy and high in spirits.
Darius had a firsthand account with his brother’s DMD and death, allowing him to cope with his disease easily. “I just like, see my brother, all the stuff he went through made me strong and he showed me you can’t sit in one mode in life. You gotta try to make some moves,” he said.
Darius’s mom and sister are an important part of his life. They help him with daily struggles and doing everyday tasks. They can also provide support for each other. Darius says that the disease made his relationship with his mom closer. Darius works very hard to inform others of DMD and what he has been through. On a weekly basis he makes Skype calls to schools and visits students. When he was on the road traveling last year, he went to 47 states and visited two schools during the day and a venue at night.
The day in the life of Darius Weems might be difficult at times but he still has hope and keeps his spirits high. He has made a big impact and raised awareness to Duchenne Muscular Dystrophy.
“It just feel good I’m famous for a reason,” he said.
Emily Soroka, 14, is a Freshman at West Forsyth High School in Cumming, Georgia
Lan’Tiqua Burks, 15, is a Sophomore at Cascia Hall Preparatory School in Tulsa, Oklahoma
Damarcio McCoy, 15, is a Sophomore at Muscle Shoals High School in Muscle Shoals, Alabama
Taking life one day at a time and never taking a day for granted, Darius Weems, a 20-year-old living with Duchenne Muscular Dystrophy (DMD), struggles with everyday tasks and depends on others.
"You can't stop yourself from coming to Earth; you can't stop yourself from leaving the Earth," Weems said.
An African-American male who is confined to his red and black power wheelchair, Weems’ most noticeable traits are his smile and happy attitude. Having a conversation with Darius you would never think that there’s anything wrong with him, but his disease takes a toll on him and the people around him. Darius tries to do some things in his own special way to be independent but he still depends on other people for a large part of his day.
Darius has a positive attitude toward life although he is living with DMD. He was diagnosed at age 5, and his brother Mario died of the same disease at 19 years old. Duchenne Muscular Dystrophy is the number one genetic killer of children and one in every 3500 has the disease. Victims typically lose the ability to walk by the age of 10 and the disease is 100 percent fatal.
According to Darius, wheelchair accessibility, or lack thereof, is his “biggest challenge.”One of the many things Darius has to deal with on a daily basis is non-accessible locations. He goes to places that are not wheelchair accessible to try to raise awareness of the situation.
“I like to go to places that are not accessible, so maybe if they see me, like a person in a situation, they would change it, if they see me come there and I can’t get in there and my friends can. Maybe they would just try to change the place,” Darius said.
“Accessibility is dependent on the owner,” says Amble Johnson, who helps Darius and deals with press.
Accessibility can be a big problem for people with DMD. They need help going places if they want to leave the house, and need to get driven around. Darius’s mom is there for him to help with these things. Darius’s wheelchair constantly breaks down, which also temporarily demobilizes him.
Eric Ninden, a victim of DMD who makes YouTube videos, needed help brushing his teeth by time he was out of high school and cannot lift his hands to his ears. Darius and Eric need help from friends and family with everyday tasks that wouldn’t be thought twice about for a person without DMD.
Darius has to take six medicines daily for his heart and is currently on a low sodium diet to stay healthy. He let out a laugh when he mentioned he cheats every once in a while. Taking medicine will not cure DMD, but it will help strengthen his heart and help his body function. Eric Ninden is on a diet like Darius that consists of avoiding sugar, refined food, and dairy products; instead he eats organic food. It’s important for a person living with DMD to stay on a healthy diet so they don’t become obese and cause any more stress on the muscles.
Support from friends and family make a huge difference to the victim. It takes away worry and stress, and helps them stay happy and high in spirits.
Darius had a firsthand account with his brother’s DMD and death, allowing him to cope with his disease easily. “I just like, see my brother, all the stuff he went through made me strong and he showed me you can’t sit in one mode in life. You gotta try to make some moves,” he said.
Darius’s mom and sister are an important part of his life. They help him with daily struggles and doing everyday tasks. They can also provide support for each other. Darius says that the disease made his relationship with his mom closer. Darius works very hard to inform others of DMD and what he has been through. On a weekly basis he makes Skype calls to schools and visits students. When he was on the road traveling last year, he went to 47 states and visited two schools during the day and a venue at night.
The day in the life of Darius Weems might be difficult at times but he still has hope and keeps his spirits high. He has made a big impact and raised awareness to Duchenne Muscular Dystrophy.
“It just feel good I’m famous for a reason,” he said.
Emily Soroka, 14, is a Freshman at West Forsyth High School in Cumming, Georgia
Lan’Tiqua Burks, 15, is a Sophomore at Cascia Hall Preparatory School in Tulsa, Oklahoma
Damarcio McCoy, 15, is a Sophomore at Muscle Shoals High School in Muscle Shoals, Alabama
Wheelchair Accesibility Through the Years
By Nicole Alanko and Kathy Garner, M&M TIPsters“Accessibility is a bigger challenge than anything.” Darius Weems would know. As a 20-year old with Duchene Muscular Dystrophy, the Athens native has traveled the country spreading the word about his disease, and showing people about life in a wheelchair.
“It was random places that were more accessible,” Darius said. “It varies from different places I go to. I like to go to places that aren’t accessible so that if they see me, like a real person, they’ll want to change it. If they see me, they’ll be inspired to change it.”
Darius is one of the more famous people that is trying to change wheelchair accessibility. It’s a fight that picked up momentum in 1932 with the invention of the first folding wheelchair. This wheelchair was called the Everest and Jennings chair. Before this time, wheelchairs had been heavy and it was difficult for people with disabilities to leave their homes, so accessibility to public buildings was not an issue. After the invention of the Everest and Jennings chair, however, disabled people were able to put their chairs in their cars and go anywhere. This was how the Disability Rights Movement began.
With advancements in medicine, more people were living through serious injuries that normally would have caused them to die. Many of these were veterans of the World Wars, who then began to protest in America for more rights and more access to public places.
The Americans with Disabilities Act was originally passed in 1980, with revisions made in 2008. This Act was meant to enforce stronger legislation pertaining to the rights of people with disabilities. It discusses employment, access to buildings and public transportation, and communication devices.
“No individual shall be discriminated against on the basis of disability in the full and equal enjoyment of the goods, services, facilities, privileges, advantages, or accommodations of any place of public accommodation by any person who owns, leases (or leases to), or operates a place of public accommodation,” according to the Act.
The full Act itself is very simple, with specific guidelines. Sections 1, 2, and 3 are all general knowledge sections. They detail the purpose as well as general information and vocabulary used in the remainder of the document. Section 4 details the minimum requirements of areas, including but not limited to curbs, stairs, toilet stalls, water fountains, and saunas, to make them handicap accessible, including exceptions. Sections 5 through 15 specify requirements for specific areas, such as restaurants, libraries, and medical care facilities.
This was an extremely important piece of legislation that laid the foundations for new changes to come. While after twenty years, not every building is wheelchair accessible, change and success will come. Darius himself does not advocate for any specific legislation.
“Accessibility is dependent on the owner,” said Amble Johnson, a writer for the Darius Goes West organization. “People will want to change. They’re just ignorant.”
Nicole Alanko, 16, is a Junior at Riverheads High School in Staunton, VA.
Kathy Garner, 15, is a sophomore at Ursuline Academy in Dallas, Texas.
Other Resources:
http://www.ada.gov/cguide.htm
http://www.ada.gov/
http://www.ada.gov/adastd94.pdf
Spreading awareness for DMD
By Paxton Swisher, M&M TIPster
Most Americans haven’t heard of it. Most people can’t tell you what it is. No, it’s not some new fad. It’s the number one genetic killer of kids.
Duchenne Muscular Dystrophy, or DMD, is becoming more and more common and there is no cure. Before, about 6 years ago there weren’t many fund-raisers for it either. This all changed when a 15 year old Darius Weems, who had never left Athens, Georgia set off on a road-trip with 11 of his friends. Darius has DMD and went on the trip mainly to get his wheelchair pimped on the popular show “Pimp My Ride.” But he also wanted to spread awareness about DMD. The documentary about this trip was entitled “Darius Goes West” or DGW. The movie went viral, fast. Using aspects of social media like Twitter and Facebook, this sparked the raging fire that is the “Darius Goes West” campaign against DMD. Since the movie, the DGW team has taken every opportunity to spread the word and gather donations to fight DMD and hopefully find a cure in our generation.
Since the release of the film, the population helping to fight DMD has greatly increased. More and more people are seeing the film and wanting to make a difference. Darius describes the way the message is mostly spread is by “word of mouth.” The newest development in the campaign against DMD is that the DGW movie is now free on their website. They call this the “Play it Forward” campaign. This was started in the hopes that people will watch the movie for free, and then forward it and send it to all their friends, spreading the message about DMD. But the movie and play it forward campaign is just one aspect of the overall one to fight DMD.
Not only is the campaign meant to spread the word about DMD, but also about having wheelchair accessible buildings. In the film, Derius was often unable to go places because they weren’t wheelchair accessible. Darius said in an interview, “I like to go to places that aren’t accessible so that if they see me, like a real person, they’ll want to change it. If they see me they’ll be inspired to change it.” This is another cause that the campaign to spread awareness can help.
In the film, Darius is bet to eat a spoonful of wasabi, or “goslabi” as he calls it. Being one of the most loved parts of the movie, the DGW team decided to start up the “goslabi challenge.” According to their website, participants are supposed to start a fund-raising page. Once the fund goal is met, they each eat a spoonful of wasabi sauce and record it on film. The proceeds then go to help DMD and the best videos are eligible to win cool prizes. This will both raise funds for finding a cure to DMD and spread awareness about the disease.
From the “goslabi challenge” to Darius being interviewed on news programs to Big Daddy Weems himself visiting schools across the country, it’s obvious that the campaign to find a cure for, and spread awareness of, DMD are going well. However, the fight is not won yet. Donations are still needed, and there are many Americans who still don’t know what Duchenne Muscular Dystrophy is. Help the campaign for spreading the message about DMD by donating through the “Darius Goes West” website, Twitter, Facebook, Youtube
Paxton Swisher, 15 years old, is a sophomore at Parish Episcopal school in Dallas,Texas.
Most Americans haven’t heard of it. Most people can’t tell you what it is. No, it’s not some new fad. It’s the number one genetic killer of kids.
Duchenne Muscular Dystrophy, or DMD, is becoming more and more common and there is no cure. Before, about 6 years ago there weren’t many fund-raisers for it either. This all changed when a 15 year old Darius Weems, who had never left Athens, Georgia set off on a road-trip with 11 of his friends. Darius has DMD and went on the trip mainly to get his wheelchair pimped on the popular show “Pimp My Ride.” But he also wanted to spread awareness about DMD. The documentary about this trip was entitled “Darius Goes West” or DGW. The movie went viral, fast. Using aspects of social media like Twitter and Facebook, this sparked the raging fire that is the “Darius Goes West” campaign against DMD. Since the movie, the DGW team has taken every opportunity to spread the word and gather donations to fight DMD and hopefully find a cure in our generation.
Since the release of the film, the population helping to fight DMD has greatly increased. More and more people are seeing the film and wanting to make a difference. Darius describes the way the message is mostly spread is by “word of mouth.” The newest development in the campaign against DMD is that the DGW movie is now free on their website. They call this the “Play it Forward” campaign. This was started in the hopes that people will watch the movie for free, and then forward it and send it to all their friends, spreading the message about DMD. But the movie and play it forward campaign is just one aspect of the overall one to fight DMD.
Not only is the campaign meant to spread the word about DMD, but also about having wheelchair accessible buildings. In the film, Derius was often unable to go places because they weren’t wheelchair accessible. Darius said in an interview, “I like to go to places that aren’t accessible so that if they see me, like a real person, they’ll want to change it. If they see me they’ll be inspired to change it.” This is another cause that the campaign to spread awareness can help.
In the film, Darius is bet to eat a spoonful of wasabi, or “goslabi” as he calls it. Being one of the most loved parts of the movie, the DGW team decided to start up the “goslabi challenge.” According to their website, participants are supposed to start a fund-raising page. Once the fund goal is met, they each eat a spoonful of wasabi sauce and record it on film. The proceeds then go to help DMD and the best videos are eligible to win cool prizes. This will both raise funds for finding a cure to DMD and spread awareness about the disease.
From the “goslabi challenge” to Darius being interviewed on news programs to Big Daddy Weems himself visiting schools across the country, it’s obvious that the campaign to find a cure for, and spread awareness of, DMD are going well. However, the fight is not won yet. Donations are still needed, and there are many Americans who still don’t know what Duchenne Muscular Dystrophy is. Help the campaign for spreading the message about DMD by donating through the “Darius Goes West” website, Twitter, Facebook, Youtube
Paxton Swisher, 15 years old, is a sophomore at Parish Episcopal school in Dallas,Texas.
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